Quality of CareResearch Programme > Advance directives in dementia: why are they not effective? Marike de Boer VU University Medical Center EMGO Institute for Health and Care Research Department of Nursing Home Medicine Amsterdam, the Netherlands

Advance directives in dementia Introduction Background Methods Findings (preliminary) Conclusion

Background Advance directives statements which allow people, before decisional incapacity, to give directions for future care Types of advance directives Limited information on use oral advance directive ↔ written advance directive proxy directive treatment directive negative positive treatmenttreatment directivedirective medical euthanasia treatment

Methods Survey among nursing home physicians - general questions about the use of advance directives - case-specific questions Additional interviews: - nursing home physicians (12) - relatives of people with dementia (9)

Results (1) - questionnaire Prevalence -On average 33 pg-patients -One or two have an advance directive -Less than half (47%) of the directives include a request for euthanasia

Results (2) - questionnaire Physicians without experience (n=324) % Physicians with experience (n=110) % Total (n=434) % Yes9,014,510,4 Yes, if the patient is competent29,330,929,7 No40,435,539,2 Don’t know21,319,120,7 Attitudes of physicians Do you consider it possible you would, in the future, perform euthanasia on a patient with dementia who has an advance euthanasia directive? 40,1 38,345,4 Actual practice - in only 4 cases euthanasia was performed (<1%) - all other cases: euthanasia was not performed

Results (3) - questionnaire Indicated reasons for not complying with advance euthanasia directive: N (110)% Policy of nursing home1614,5 Personal beliefs1715,5 Situation directive not applicable1715,5 No unbearable suffering4036,4 No hopeless suffering1110,0 No communication: wish unclear87,2 No actual wish87,2 Patient imcompetent54,5 Other7568,1 Other factors: - in 13% of the cases the patient did not want euthanasia - in 15% of the cases relatives of patients did not want euthanasia

Results (4) - interviews Relatives who do not want euthanasia ‘ My father, yes, he would have never wanted this for her of course, but to give her an injection, so to speak of, well, that he didn’t want either, you know’ [relative] Difficulties in determining the ‘suffering’ ‘The patient expressed discomfort at times she was aware of her deterioration or when things happened she didn’t like. At other times there was no awareness and the patient seemed ‘content’’ [physician] ‘we actually had the feeling, that despite the fact that she became demented, eh she could still enjoy many things. It wasn’t really someone who ehm who was suffering’ [relative]

Results (5) - interviews Absense of actual wish ‘..a patient with dementia who has an advance euthanasia directive but does not ask for it, for actual life-termination, you know, or does not specifically expresses all sorts of death-wishes and consistently does that, then I wouldn’t even think about it [euthanasia]’ Policy of nursing home often restricts euthanasia ‘I have indicated that it is not possible for me to end madams life in case her situation is stable and she does not ask for it herself, only because she lives in a nursing home’ [physician] ‘Take care of madam as well as possible and relief complaints if they occur, but not to push it to the limit’ [physician]

Results (6) - questionnaire According to physicians in 63% of the cases relatives wanted a restricted policy of treatment instead of euthanasia In 93% of cases decisions were made not to start or withdraw one or more life- prolonging treatment(s) Factors influencing the decision to forgo life-proloning treatment(s) No influenceLimited influence Strong influence Very strong influence Determined decision n/aUnknown Medical situation4,55,510,032,740,9-6,4 Severe other illness16,415,516,420,017,37,3 Opinion relatives10,920,918,227,39,15,58,2 Opinion representative4,514,522,739,110,91,86,4 Opinion nursing staff4,522,731,825,56,41,87,3 Personal opinion physician 1,816,424,529,118,2-10,0 Patient-docter relation20,918,227,314,58,22,78,2 Policy nursing home37,317,318,212,73,62,78,2 Opnion patient21,812,715,5 10,912,710,9 Advance euthansia directive 8,212,720,926,423,6,97,3

Conclusions Positive attitudes towards advance directives in general Advance (euthanasia) directives do not seem to achieve what they intend to achieve Reluctance to perform euthanasia in cases of dementia Questions can be raised regarding the effectiveness of advance directives of people with dementia Reconsider the role of advance (euthanasia) directives

Advance directives in dementia Thank you for your attention! Marike de Boer